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Friday, February 4, 2011

Conquering Evil Twins

At some point, is it possible to look in the mirror and see a snake oil salesman or Halle Berry staring back? You know, someone doing more harm to the diabetes community than good? That thought horries me. But it's how I feel at the moment, and regrettably it's something I have brought on myself. My evil twin came out to play, and I'm feeling the consequences of that.

Much has been written and discussed recently about a diatribe article with JDRF CEO Jeffrey Brewer, focusing on the organization’s focus and direction. Discussion on that article began online and some passionate parents of Children With Diabetes voiced their thoughts and views on the article and overall topic. Some expressed frustration with the direction while others didn’t. The Adult Type 1 community joined into the discussion, and unfortunately the conversation soon dwindled into a name-calling slug-fest onine between some CWD Parents and the Adult Type 1 community.

Here's the thing. I disagreed with some of the parents, and saw that they were attacking another Adult Type 1 about the focus of the JDRF while voicing opinions that it's all about their kids. But instead of simply responding with my views, I posted a comment that was written in the heat of the moment and had sarcasm, anger, and frustration dripping from it like insulin at the end of pump tubing. While I didn’t create the issue or tension that was evident in earlier posts, I fueled the fire and helped lead this discussion into what it became.

I regret this with every ounce of my being, and I apologize for that.

This community and everyone in it has saved my life and fed my soul, and the last thing I want is to see it drawn apart. What concerns me most is that some in this chat have described the Adult Type 1 online community as not being professional, holding the parents in disdain and enjoying the negativity and inflamatory drama.

That is absolutely incorrect. While I only speak for myself as one guy who's been diabetic for a long time, we do NOT have disdain for the parents of CWD. Rather, we have only respect and admiration. I’ve written on this theme repeatedly, as have many many many others.

It crushes me that our community can go after each other like this. I've been reduced to tears more than once about how I somehow was a part of a debate that ended with any parent of a Child With Diabetes thinking any Adult Type 1 thought they are pathetic. That breaks my heart, and I've considered tossing in the blogging towel because of my brief but monumental lack of civility.

But I've thought twice about that, realizing that while I may feel like I'm on the level of a Halle Berry cure-preaching snake oil salesman, this is all in my mind and it's time to move on. Together. So, I'm owning my mistakes and moving on. Hope you're willing to join me.

To me, this highlights the dangers of how we interact in this still-new, ever-expanding Internet world. Just because we can spout off with a few clicks of a keyboard, doesn’t mean we should. We must ALWAYS be mindful of what we are saying and how it’s being said, to do our best to not spark a forest fire where a few flames already exist. Just because we can, doesn’t mean we should. Civility is key. Negativity achieves nothing, but destroys everything.

Reflecting on how this all came to be, I found some interesting thoughts in a recent Mitch Albom column on Jan. 30 from the Detroit Free Press. He was discussing the recent issue about how some NFL players turned to Twitter to voice their frustration after Jay Cutler's injury that took him out of an important game. Here's what Mitch wrote:

"Who knew there were so many closet Shakespeares in there? All they needed, apparently, was a writing tool that fit in their pockets. They've got it now -- iPhones, BlackBerrys, Droids -- and here is where theTwitter/Facebook universe is taking us: All thoughts must be expressed. Filters are for weaklings. Say it loud, say it proud! And never have to look a man in the eye."

He continues, "How cowardly for these athletes to take apart one of their own from the comfort of their living rooms. Apparently people like (those athletes) feel just because they once held a football, everything they say about the game or its players must be accurate."

This transcends into the Diabetes Community, and the embarrasing display of interaction we've had with some our own. The wise Jeff Hitchcock recently noted that people often turn into their evil twins when communicating online.

I'm sorry that I allowed my evil twin to take over, and hope others are too and own up to it. We are all in this together, sharing stories and giving support while we ride this rollercoaster brought to us by diabetes. I want to refocus and start on the same page, so that even if we disagree on aspects we can still work together and combat those true battles that face our community - media inaccuracy, public misconception and unawareness, snake oil salesman and celebrity phonies who think eating less spaghetti and praying to the Bible will cure diabetes. We can debate reasonably and respectfully how we navigate the road before us and how we could find our ways to a cure. And we can help those friends who need us through whatever means is necessary.

Once, before the thumb became mightier than the sword, we were focused on that broad goal as one community. Let's get there again.

I'm going to unplug for a bit to find my Inner Chi. Maybe go listen to some #BluntLancet. Eat some bacon. Focus on those glittering unicorns and puppies. I'll be doing my own thing behind the scenes, just not as visibly in the blogosphere for now. Not sure how long, though. Then, count on my being back with the evil twin locked away in the virtual closet.

In the meantime, hope there's steady blood sugars on your end and I'll "see when I see you," or whatever the parliance is for that in this online universe.

9 comments:

Beautiful post! Your sincerity definitely shows. Don't be to hard on yourself! That thread brought out the evil twins in a lot of people, myself included. I was angry too, and sent a few tweets I regret.

We are only human, after all. Our first response when we feel threatened is to lash out in anger and get defensive. We're all guilty of that.

Take all the time you need, but know we'll be here waiting for you when you're ready.

I didn't get invovled with any of the hoopla that went on (and in fact tried to avoid it altogether - my post about a cure was written awhile ago and just happened to be posted on the eve of when thi all blew up. What can I say, I have mad timing skills!

Anyway, it makes me sad that within the community we feel an us vs. them mentality when we are really all wanting the same things.

I hope others are as mature and civilized as you and realize we are all on the same side.

Here is the thing. The name calling came from people who don't know you. I know you. Well, you know what I mean...maybe I don't know you-know you, but I consider you a friend. I know your heart and it is a good one. To call someone names who you have never met, nor know...that is just wrong. Thank you for this...I as always, appreciate your thought process, and who you are.

I pray some over zealous parents haven't divided me from a group that I look up to, and respect more than you'll ever know.

I wasn't part of it. I heard about it after the fact and, when I clicked to start investigating, I decided it wasn't worth it.

In the end, I do believe in JDRF. I believe my daughter would not have a pump or a CGM or insurance approval for 10 strips a day.

But I do also believe they have a responsibility to "improve the lives of people with T1D" in communities that may not be able to fund raise for them. I do believe they have a responsibility to help solve the global problem that exists when people die every day because they cannot access insulin.

I think it takes a lot of integrity to post something like this. Good man.

I think my initial tweets that first night were probably pretty emotional as well and were quite condescending. I should know better as well. It often takes me 2 or 3 days to really think things thru on emotional issues like this. It's not often easy to put yourself in the shoes of someone else and I can forget that sometimes.

I managed to miss the fight until it was over, but I have been an obnoxious, sarcastic jerk at times, and found myself apologizing for it later.You've done very well.This is naturally an issue, a lot of issues, we all feel very strongly about.A couple of parents of diabetics saved my life, so I am totally with them. I'm glad I haven't had to deal with it in my own children.But I know what it's like to try to get involved in something I thought was for people like me, and feel totally out of place because I was grown up.We do need to be civil, and we do not need to pretend that there aren't dichotomies and dilemmas that need to be considered.

She DOES have diabetes, but it is a very unusual form, called, variously, Type 1b, Ketosis-prone Type 2 and Flatbush Diabetes.

People with this form of diabetes are almost always black or Asian, and they present in ketoacidosis, but after BGs are brought into control, they can go off insulin, and as long as they monitor their BGs, they can often get along with no medication at all or sometimes oral meds.

Halle may not know very much about her particular kind of diabetes, since none of the public do (and very few in the black community), and most doctors don't either. So she may say things that may not actually be true, like she "cured" her diabetes. She may be off medication for the moment, but the diabetes is likely to come back as Type 2. But at least we should know that Halle Berry DOES have diabetes, even if it's a rare form and quite different from our own.Natalie ._c-

Thanks for the info on Flatbush diabetes, Natalie.This further confirms what I've been saying that rather than have just another name for "type 1 diabetes," we really need descriptive names for many different types.The names type 1 and type 2 carry no inherent meaning, and the idea that there are only 2 or three types is totally wrong.

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Mike Hoskins

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Just a guy in his 30s, who's been living with Type 1 diabetes since the age of five. A husband, friend, dog owner, journalist, writer, history lover, movie buff, Sigma Pi Man, and huge fan of Coffee & Conversation.

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